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ABOUT THIS CASE FILE

I have grown up my entire life being a mystery patient, constantly feeling sick, facing unexplained symptoms, treatments being ineffective, injuries never healing, and experiencing chronic pain. When I was younger, I thought all of thi
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I have grown up my entire life being a mystery patient, constantly feeling sick, facing unexplained symptoms, treatments being ineffective, injuries never healing, and experiencing chronic pain. When I was younger, I thought all of this was normal because I never knew life differently. Once I became aware that not everyone lived in constant pain, I wanted to avoid the embarrassment I had to face whenever I told someone how I felt, and they didn’t believe me or assumed I was exaggerating for attention. I found it best to pretend that I was happy and healthy, since that’s how I looked, and to only let my guard down for very few people in my life. I got used to going to doctors, them not knowing why something was happening, and them telling me I was fine. I struggled with maintaining any faith in the medical system because even when it did not seem possible to experience any more pain while still being alive, they offered no help. The few doctors that did listen, told me that it was best to not get my hopes up and to accept that I may never gain relief or fully comprehend why I am in so much pain.

Since I have grown up in this way, it has always been normal for me to feel an immense amount of pain in a spot for a couple of months and then become immune to it. Then, it’s almost as if I’m oblivious to it unless I specifically think about that area of my body. But as this process occurs, and I think it isn’t possible to feel any more pain, a new symptom pops up and takes over focus. The cycle just continues, and I am forced to consider the additional pain as my new “normal” and get used to it because I simply have no other choice. I have struggled through this cycle, but have always been able to get used to what I was feeling without anyone even noticing I was struggling.

This cycle was interrupted in 2015 when a cheerleading accident resulted in a girl landing on my head and neck, ultimately giving me a concussion and neck sprain. Since that moment in time, my entire world has changed. After that, I have had a headache every minute of every single day for four years. The injury heightened my baseline head pain to a level that took more time and was more difficult to become immune to than any previous injuries. This baseline pain was so severe that I was concerned it would be impossible to become used to, but I also couldn’t imagine living with. Unfortunately, since my initial post-injury baseline, the pain has only become more severe more often, making me appreciate the times where the pain is “only” at my baseline. As this baseline continually increases, I am able to function through head pain that I never thought was possible to experience and barely even hesitate through head pain that almost anyone I know would be rushing to the ER for. The closest I ever get to relief is when I am experiencing my baseline pain, a pain that is more severe than anything I have experienced previously.

Although I am tolerant to my initial post-injury baseline, my baseline is increasing at a rate too quickly to become use to. Over the past four years, I have truly struggled to make it through each and every day due to the pain severity increasing and the additional symptoms worsening. I have lived through pain that I would never wish on my worst enemy and have made it through the nights that I thought were impossible to survive. Although I have become tolerant to my lowest baseline pain (which now occurs very rarely), I don’t think I could ever become immune to my “death days”. These are days where the pain is so unbearable and excruciating that it seems impossible to still be alive while in this much pain. Since my injury, I have had to accept that about 3-7 days a week I will be unable to properly function due to the pain. I will be forced to spend my day/night curled up in a ball holding my head, where it hurts too much to think but it is also impossible to sleep. The pain is so unbearable that even lying down, without moving, feels as though it could kill me. When I am at my worst, the only time I get up is when the pain forces me out of bed to throw up, making it feel as though my head is about to explode.

As my baseline pain has only intensified over the years, I am worried that my “death days” are soon to become my new baseline. As of now, the two are very close. For the past couple of months, every single day has ended in a death day. At my best, I’m awake until 2pm without being there yet, sometimes I’m awake for a couple of hours, but other times my day is over the second I wake up.

In addition to the worst head pain imaginable, my entire spine hurts from the base of my head, all the way to my tailbone. The muscles in my neck are so agitated that if someone gently rubs it for a couple of minutes, I will be incapable of doing anything for the rest of the day due to the pain that it causes in my head. Even from just daily tasks, my back will be in so much pain that I start shaking. My spine has always hurt, but since the injury, it is much worse (similarly to my headaches).

The injury has also significantly diminished my ability to cognitively function. Although I’m able to “fake it” around practically everyone and maintain a near perfect 4.0 in college, my brain doesn’t work how it used to. What would have taken me 30 minutes prior, now takes me hours to complete and I’m not even sure as to why. I have to write down EVERYTHING, just so I am able to remember. I no longer have a memory of my own, but rather have to rely on pictures and words. I struggle to pronounce words, remember what I’m saying mid-sentence, keep my train of thought going, accurately spell, read things out loud, and just be able productively communicate. When my pain is at its worst, I just give up on trying to talk because it’s embarrassing to appear as unintelligent as I do. As of more recent, I am able to hear that someone is speaking to me, but for some reason my brain just cannot translate what they are saying so I have to have them repeat it until I can understand. A cognitive test indicated that I have difficulty getting information into my brain, but not to a degree that could explain my diminishing ability to function.

Additionally, this injury immediately worsened my treatment-resistant depression, making me suicidal at the time. I have grown to become more immune to the pain, but as the intensity continues to increase, the pain has become impossible to ignore. After the pain recently worsening to new levels, along with my diagnosis of EDS ultimately causing a 5-year relationship end, my depression is at its worst. I’ve tried over 20 antidepressants, 6 weeks of TMS, IV ketamine, and esketamine. I feel as though I am doing everything I am capable of doing in order to feel better, but I don’t think it’s possible to genuinely feel happy when in this much pain. When you are physically in so much pain that you don’t want to be alive, it is extremely difficult to convince your mind that things could get better.

I’ve tried acupuncture, medical marijuana, opioids, muscle relaxers, sphenocaths, nerve blocks, deep needling, massage, chiropractic, ketamine, cefaly, numerous migraine medicines, and headache prevention medications. Nothing has ever gotten rid of the pain, while a majority of the treatments actually leave me feeling worse. I’ve been checked for Chiari malformation and spinal instability, have had head and neck MRIs, but the cause still remains a mystery. I am in the process of being approved to try Botox (although this remains a later option due to the risk with EDS) and also in the process of getting a spinal tap done.

Since this injury, and after 20 years of pushing through other’s disregard, I was finally diagnosed with Ehlers Danlos Syndrome Type 3 (March 2019, with suspected POTS and MCAS). I waited for a diagnosis my entire life, always sensing that there would be so much relief and that things would slowly fall into place and get better. Unfortunately, that has not been the case as my pain has drastically become worse. My diagnosis explains a lot of my chronic pain and symptoms, but it doesn’t explain my most debilitating and excruciating component, my head. I have pain throughout my entire body, but the intensity of the head pain has made me not care about any other pain; nothing is even considered painful compared to this.

I have considered that my continued head pain could be from my concussion never healing properly (similarly to my previous injuries and in conjunction with having EDS). However, this doesn’t match with what is occurring because the pain has significantly worsened over time and is accompanied by additional symptoms (dizziness, vision changes, memory issues, speech problems, cognitive issues, etc). I, along with doctors, have also suspected post-concussion syndrome. I do have a majority of the PCS symptoms, but I don’t understand why I would be continually getting worse over the span of four years. If what I have going on is PCS related, I don’t understand how this injury could be so prominent, cause significant suffering, and still lack the essential information to allow patients and medical professionals to adequately understand what is occurring. I have also thought that my CRPS could have spread to my head, but my symptoms don’t match up with that either. It is also possible that my chronic tight neck muscles could be contributing to the head pain, but doesn’t necessarily explain the cognitive symptoms or explain my pain patterns/triggers.

After being diagnosed with EDS and researching other patients’ stories, it seems evident that what I am experiencing could be related to EDS. However, there is very little information regarding EDS and the actual cause of patients’ headaches (in correlation to EDS) is unknown. If this is an aspect relating to EDS, then it is disappointing to me that so many people could be suffering from something that the cause remains unknown. Attributing what I am experiencing to EDS provides no actual explanation when the correlation between EDS and excruciating head pain is unknown. Unfortunately, based on the 20 doctors that I have been to since the injury, it seems as though there is very little hope of finding the cause or making any progress. The last doctor that I went to, who is extremely intelligent and is compiling research on myself and others, repeatedly admitted that no doctor is going to help me. Although I have thought this on numerous occasions, I never thought that a medical professional would admit that doctors typically aren’t willing to even try to help when they are unsure of what to do or what the cause could be. This means that sometimes the patients that need help the most are completely disregarded, left to figure it out by themselves, and suffer in silence. I understand that human bodies are exceedingly complex, and it can take decades to understand just one element, but something needs to be done because no person should ever have to live this way. The explanation wouldn’t even matter so much if there was just one form of relief that could take my death days back down to my baseline.

I realize that there are countless diseases and medical components that need and deserve additional research, and since only one type of EDS is life-threatening, EDS probably isn’t at the top of the list. But just because EDS isn’t life-threatening, that doesn’t mean that it doesn’t take lives away from patients.

I feel as though I am running out of options to try next. All I wish for is either a second of relief or to be able to comprehend why the pain is occurring. Ever since my injury, it feels as though my life has been put on hold. I am so focused on surviving each day that I am no longer truly living. I rarely go out, I don’t enjoy anything, and I feel as though my life is being sucked up by my symptoms. I’m 21 and missing out of what others consider their prime years, and I’m worried my future will be ruined by the pain too. To put productive use to this pain, I have started a blog to raise EDS awareness. https://wheremyzebrasat.wixsite.com/mysite

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